The right to parent
Should a couple, where both parents have Down syndrome, be able to procreate?
If you watch Australian Story, you’ll know what I’m talking about. If not, let me give you a brief synopsis of the episode “Tough Love”:
Michael Cox and Taylor Anderton are two world-class swimmers who are in love, recently engaged, and excited at the prospect of having children.
Now if you’re like me you’re reacting in a way similar to this:
However, this was not the reaction that was seen from either of these youngsters parents. Why? Because Michael and Taylor both have Down syndrome.
What is Down syndrome?
There are 3 different types of Down syndrome:
- Trisomy 21: where there is the presence of an extra whole chromosome 21 in every cell in the body (occurs in 95% of people with Down syndrome)
- Translocation: where there is an extra part of chromosome 21 attached to another chromosome (occurs in 4% of children with Down syndrome)
- Mosaicism: where there is the presence of an extra whole chromosome 21 in only some body cells (occurs in approximately 1% of people with Down syndrome)
Diagnosis of Down syndrome
The diagnosis of Down syndrome is usually made soon after birth due to the baby’s appearance, with some of the physical features of a baby with Down syndrome including a flat facial profile, eyes that slant upwards and outwards, and a below average birth weight and length.
Effects of Down syndrome
A person with Down syndrome also has exposure to many health-related risks that put immense emotional and financial stress on the affected person’s caregiver and/or family. For instance, a significant number of people with Down syndrome will have:
- Hearing and sight issues
- Poor immune systems
- Respiratory problems, coughs and colds
- Obstructed gastrointestinal tracts
- An increased risk of getting infections
- Heart problems at birth, which may require surgery
Down syndrome, in the majority of cases, is not an inherited condition, and the syndrome does not discriminate; affecting people of all ages, races, religious backgrounds and economic situations.
So Michael and Taylor have Down syndrome? They’re human beings, they deserve to make their own decisions about what they do with their lives and bodies. Hell, it’s even recognised by a UN Convention, prescribing that persons with disabilities have the right ‘to marry and to found a family on the basis of free and full consent of the intending spouses’.
Why should having Down syndrome affect their right to want, and eventually have, children?
This was the question that led my original internal rant on the subject, but once I got past my emotionally clouded judgements, I realised that the parents of the two highlighted some very important points regarding the suitability of two Down syndrome people raising a child. These points, combined with further research into the contentious topic, revealed to me that there are some serious factors to ponder before immediately jumping on the pro-baby wagon…
#1 The Caregivers
One of the main arguments made by Taylor’s Stepfather, was that the grandparents, as caregivers to Michael and Taylor, would have to play a significant role in the upbringing of a child. It is no surprise, after already spending over 20 years raising children of their own (one of which is disabled) that the couple’s parents aren’t thrilled about the idea of being responsible for yet another child — of which may also have Down syndrome.
This argument is applicable to any caregivers of a Down syndrome person who has already experienced the intense routine of appointments, from physio, to speech, to special check-ups, and the other pressures that come from caring for a disabled person for their entire life. To me, it’s understandable that a caregiver may be resistant to the idea of this person, who already requires increased support, wanting to introduce another huge responsibility into their life.
#2 The Baby
The fertility of people with Down syndrome is significantly lower than a non-disabled person, making it very difficult for Down syndrome couples to conceive in the first place. However, should a couple like Michael and Taylor successfully conceive, there are many associated risks:
- Higher chance of miscarriage
- Increased likelihood of a premature birth, or need for a caesarean
- Higher chance of the child having Down syndrome
The last point is probably the most contentious in that it begs the question, should a Down syndrome couple have a baby if there is a high chance that child will also have Down syndrome, even though they know full well what that entails? For those of you that are curious, where one parent has Down syndrome, there is a 35–50% chance that the child would inherit the syndrome, and where both parents have the syndrome, these chances increase significantly.
#3 The Parents
This particular section deals with one big question; are a Down syndrome couple capable enough to care for a child?
As one of the main causes of intellectual disability, Down syndrome is responsible for about 15–20% of the intellectually disabled population. According to the Australian Institute of Health and Welfare, over 60% of people with intellectual disability in Australia experience severe or profound limitation in core daily living activities like self-care, self-direction, safety, communication and socialisation. Should a couple who requires so much assistance with their day-to-day activities really be responsible for a child? Or would they even be able to be responsible, wouldn’t it instead be the duty of the caregiver as stated above?
Those in Australia characterised as intellectually disabled have an IQ quotient below 70, the average is 100. This illustrates that those with Down syndrome experience delayed development and some level of difficulty learning new things, understanding concepts, solving problems, concentrating and remembering — most of which are skills that are required of a competent parent. Would a Down syndrome parent be able to help their child with maths homework, or remember dentist appointments without outside assistance?
These points illustrate the increased difficulty in having Down syndrome and being a parent, but we must also remember that there is a high chance that these couples would be parents to a disabled child. If parenting whilst affected by a disability wasn’t hard enough, parenting a Down syndrome child whilst being a Down syndrome person yourself adds so much more pressure to the job.
To answer the question are people like Michael and Taylor going to be able to cope with this responsibility…I’d like to say I hope so, because no one should be deprived of the right to have a child. However, I also understand why many people close to this situation, like Michael and Taylor’s parents, are opposed to the idea. There is a reason that it is not uncommon that Down syndrome people choose not to have children. In many of their eyes, it isn’t fair to the parents’ caregivers or the resulting child. So, I’d love to give you a straight answer, but unfortunately this is one of those things where it’s not society’s place to judge.
For more information, visit:
Down Syndrome Association of Queensland — http://www.dsaq.org.au/
Originally published at The Isthmus.